Yep, it's true! Landen is home in his own bed as of tonight! He had a little Chinese food with the whole family around the table and some playtime with Grammy and the girls to show off all his new cars. Landen is happy to be home and we are happy too!!!
The day was pretty uneventful from an activity standpoint. He did have a chest x-ray this AM with Ashley. They also got a blood sample to check his INR levels as well as some other critical values. Not sure we have described the INR in past so I will do my best to explain now. The international normalized ratio (INR) "is a calculation made to standardize prothrombin time. INR is based on the ratio of the patient's prothrombin time and the normal mean prothrombin time. Prothrombin time is a test to learn how fast the blood clots in patients receiving oral anticoagulant medication." In short, it's really a way to test how well your blood clots. In Landens case we need to thin his blood in order to help the clot in his neck flush, but not so much that it affects his new heart plumbing with the Fontan. To do this we started coumadin as a blood thinner several days ago, but since he was throwing up, we are not confident in his absorption. His INR came back at 1.3 today and was at 1.0 yesterday. The concern is that they may have overshot the dosage since the goal is 1.5. This concern caused a little bit of a pause in our day and we had to wait for our surgeon who was in the middle of surgery. The rest of the day we spent a ton of time in the playroom, walking around the hospital and just generally waiting for his blessing.
Thankfully, Dr Kaza came by and gave his blessing without exception. He agreed that as long as we take him to get blood work done on Friday, he is confident in our ability to take care of him at home! He also said that Landen no longer needed to be on the low fat diet which we were on due to his added drainage from the clipped lymphatic vessels.
All in all, we had a great discharge day and we are so happy to be home of course! Landen now will have to adjust to sleeping in his own bed...without disturbances through the night...and fewer movies on demand. Believe it or not, this may prove to take some time but we would much rather deal this challenges :) He is taking his meds VERY well, and hopefully, we find a way to help him get them down without much trouble. For now, he is just making it happen because he is a strong little man. But then again, if you're reading this, you already know that!
Thank you all for your prayers. They are always welcome, especially as we establish a new normal. He will get blood work every week and regular visits with the cardiologist team at Children's over the next couple months to monitor his progress. I have a feeling though, the hardest thing for Landen will be to NOT play hard with his sisters for the next eight weeks. He needs to be careful of his chest. We won't keep him in a bubble as we promised we would let him push his own boundaries for life, but it will be hard to keep him within some boundaries as well as keeping his sisters from "fighting back" as he will likely be rough with them soon enough :)
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| Fell asleep before we even left the parking garage! |
For now, we are all headed for a restful couple days hopefully as we settle back into "regular life"!
Enjoying the journey,
George, Ashley, Landen, Madison & Lyla
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